Saturday, March 24, 2012

A "Fun" Catch-Up Post

On Monday...I went to see Dr. Saturday. He was very excited that my wound is soo tiny - like the size of a tic-tac. He was NOT happy about the joint issues, overall pain, steroids, etc. I've also been having more pelvic pain and some issues I'd been ignoring for... like months... more about that later... he wasn't thrilled about that, either.
Now you will think of my wound every time you eat a tic tac. 
My wound has continued to do better since we increased my methotrexate slightly a few weeks ago. He thinks that I have some manifestation of IBD on my skin, so when we suppress my immune system a little bit, my body is able to actually heal properly.With my general malaise and pelvic pain, he said he'd like to get another MRI in the near future. He was worried about another abscess, but said it would be highly unlikely after all this time.

Later that afternoon, I went to a new doctor... a urogynecologist (did you know that they made doctors in that flavor?? I didn't). This is all kind of embarrassing to talk about, but IBD is a disease of taboos and embarrassing problems, so I figure I'll break the silence and just continue. I've been having some pelvic pain that's gotten progressively worse, and a drainage issue that has also gotten progressively worse. We were concerned about a possible fistula between my bladder and my reproductive system, but after some very "interesting" tests and exams, she seemed pretty sure that wasn't the case. Rather, she thinks that... wait for it... I still have an abscess and it is connecting with my uterus and draining and causing some issues. She didn't seem overly alarmed, but started me on some antibiotics and said she'd order an MRI. I had a terrible reaction to one of the tests they did (it involved filling my bladder up with blue dye... doctors can DO that?? Some doctors have all the fun!) - for whatever reason, my body decided it had had enough and I ended up shaking and sweating and dry heaving - my body was NOT happy.
I did not look like this following the test
She almost made me go to the hospital to get checked out because I was so uncomfortable. No idea what the issue was, but finally I made it home.

So... this week, my overall joint and muscle pain continued, and I was so miserable and not getting any relief despite the steroids and everything else. Finally, on Thursday evening, I went to the ER, where they juiced me up with all kinds of good meds. Unfortunately, even THAT barely took the edge off. It was nuts. I was soo miserable. Thankfully, I was blessed with two very, very nice nurses and a wonderful NP (and one not-so-wonderful doctor, but I only had to see him for a few minutes, and my interaction with him was surely colored by my extreme fatigue, pain and feeling-awfulness). My white count came back rather elevated - quite a jump from the last labs I'd had, so I figured I was definitely inflamed or something. The doctor discussed admitting me, but a final round of meds did the trick and I went home. I had been hospital-free since July, so I was very sad to break that record, but the relief was pretty desperately needed.

Friday I started the ever-so-fun journey of trying to decide which doctor to even call to get some longer-term relief. I left messages at the Rheum and Pain doctors. The Rheum nurse called back and told me to also call the Urogyn dr, which I did...
I think I need this phone
Finally, the Rheumatology doctor herself (who I have not seen in months) called me back. She asked why I hadn't seen her in so long, why I'd just been seeing the PA. I'd been wondering the same thing, so I wasn't sure what to say. They she asked who had prescribed a certain med I'm on. The PA had prescribed it to me, so I said, "Y'all did." She said, "I didn't! This isn't a med I like to use!" Oh. The PA told me to try it... should I not? She said it was fine, just addictive and dependence building and dangerous to get off of and things like that. Oh. Okay. Would that there were better communication between these providers! Feels like they're working against each other at times. I had assumed they were at least discussing these things, even if I didn't see the doctor, but I guess not. So frustrating from a patient's perspective. Anyways, she listened to my story of pain and woe, and then said, "Well, this is out of my department. You have a recurrent abscess, so you need to talk to your surgeon." She reminded me that I should probably skip my methotrexate till all this is sorted out, which is good, because I hadn't thought of that for some reason. Not so good to suppress the immune system if the body is trying to kill an infection.

Dr. Saturday had given me his cell number, since he's awesome like that, and so... I called it. On a Friday afternoon, because that's what time it was by the time I got off the phone with the Rheum doctor. He is awesome, so he got me scheduled for an MRI (not a CT scan, because he's awesome) and an appointment... for Saturday, because he's Dr. Saturday, after all.

So that catches me up to today. I got the MRI, saw Dr. Saturday... and... the MRI didn't show any abscesses that they could see - some fluid from a ruptured cyst, but that was it. But with the overall clinical picture - the low-grade fevers, feeling so badly, elevated white count, and pelvic pain, and drainage, he was rather concerned and wanted to check things out. So... on Tuesday, I am having an Exam Under Anesthesia (basically a small surgery although hopefully without cuts) to assess what's going on, where the drainage is coming from (where the abscess is) and figure out what to do. He felt that he was the more appropriate doctor to do this, not the Urogyn, since he is most familiar with my anatomy and issues. I am inclined to agree - he's done some pretty weird surgeries to my body, so I'd rather he try to sort out whatever issues I'm having than have someone else trying to figure it out.

So, why does having some kind of pelvic infection cause systemic pain issues? I have no idea, but I think that it's happened to me a couple times before - like before I had my J pouch out, and in between my surgeries last spring. I think that whatever's going on really started flaring up back in late January when I started having all the adrenal issues again out of the blue...then my pain started flaring and it's all kind of spiraled down from there. I've also lost about 5 lbs, although I'm eating well and my appetite is quite good. Dunno if that's coincidence or not, but I definitely feel like my body's been struggling.

Tuesday morning, I will go have the procedure. If Dr. Saturday sees nothing, then I dunno what we do. If he sees whatever's causing the issue, then he can 1. try to fix it while I'm under, or 2. wake me up and do more surgery later. So I'm really not sure what to expect or want or think... but thankfully, that's not my job. ;) My job is to just keep trusting in God, the One who is in control of not just my confusing body and my doctors, but the whole universe. So that's a pretty secure place to be.

Hannah ;)

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